Telling the Story of a Forgotten Plague: Chronic Fatigue Syndrome

(Written by Ryan Prior)

That’s been the story of my life since 2013, when I began co-directing and producing a film called Forgotten Plague. More than 9 years ago, as a high school junior, I fell ill with a mysterious disease and had to drop out of school. For 7 months, teachers came to my house to teach me because I was too sick to go to school, let alone hold my head up.

More than 16 doctors were powerless to give me a diagnosis. It was the darkest hour of my life. Every goal I’d ever harbored stood on a precipice, teetering toward oblivion.

Eventually I received a diagnosis of “chronic fatigue syndrome,” a name that feels insulting when your entire life has been stolen from you.

Internationally the disease is called “myalgic encephalomyelitis.” I would later learn that about 95% of medical schools don’t teach the disease, most doctors know nothing about it, and there are no FDA-approved treatments.

Even more infuriating was the fact that the disease was as common and as severe as multiple sclerosis and Parkinson’s, leaving no excuse for the medical establishment’s neglect. I knew that I was doomed to decades of disability of if I didn’t act with boldness. I found one of the two dozen or so doctors in the country capable of treating it.

I was fortunate to have a family willing to pay for treatments not covered by insurance. With time and patience, I recovered enough so that I could start college at the University of Georgia. I kept walking, ever so haltingly, toward the life I’d imagined.

During college, I spent time working at Newsweek and at USA Today. Covering news from around the country was thrilling, but I wanted to make my own mark. I wanted to tell a story no one else could tell. When a major news item on my disease occurred, I ventured to tell my own personal story in USA Today.

The story took off, and was far more successful than anything else I’d written.

People from all over the world wrote in, many telling the most devastating of stories. They were sufferers far sicker than I was, who spent years laying in darkened rooms, many of whom lost the ability to walk and talk. Some spoke even of suicide as the only way out of their unending hell.

My story turned into a series of articles. As I became more immersed in the global advocacy community, that larger, more important project I’d always dreamed of was coming increasingly into focus. Finally, after graduation, I announced a feature film project in another USA Today piece.

I wrote, “There is no way I can ignore these facts knowing I have access to a national platform and have the skills to tell the stories of these unheard voices.” I still live by those words today.

The film project had its ups and downs. I was named a Stanford Medicine X ePatient Scholar and the national ME/CFS Advocate of the Year. My co-director, Nicole Castillo, won a regional Emmy Award for a series of news stories she produced on the disease with the CDC.

We travelled all over the country, filmed cutting edge research, spoke to some of the best scientific minds in the world, and saw things we’d never dreamed were possible. Yet there were depressing lows: even our ultimate fundraising total of $150,000 was always never quite enough. We worked 14-hour days. There was always some financial or regulatory threat that might shut down our fledgling non-profit production company.

Each day was like drinking out of a fire hose to learn everything we needed to know from molecular biology, to social media marketing, to IRS policies, to digital video codecs, to distribution contract negotiation. At one point I publicly asked questions about the prospect of receiving government grants to prop up our organization and we were bombarded with criticism. A few said it was like I was selling my soul to the devil.

For a patient population neglected and mocked for decades by the medical establishment, our film needed to be sufficiently anti-government to shore up our passionate fan base. Such is the time-honored tradition from 19th century muckraking journalism to the Web 2.0 world’s crowd-funded social justice documentaries.

At times we weren’t so much making a movie as were leading a movement.

And the weighty mantle of leadership was always a black dog nipping at my heels. Throughout all of it, however, the goal was always burning brightly in our souls. On a daily basis we received letters from sufferers from all over the world who told us they were rooting for us, praying for us. One woman told us she’d lost her job because of the disease and feared she’d soon be evicted. Yet we were welcome to stay in her house when we came to her city…if she still had it.

Another one of my favorites: “I’m an atheist, but bless you for what you’re doing.” One day, while filming in Boston, both Nicole and I were admitted to the hospital because of the trauma of running a nationwide film production. The next day I received an e-mail from a woman in South Africa saying she was praying for us, and it added the tiniest spring to our hobbling steps.

That type of motivation is far greater than money, and confirmed my belief that there was nothing more important I could be doing with my time on this earth.

Friedrich Nietzsche said it best: “the man who knows his ‘why’ can overcome almost any ‘how.’” Our “why” has been a North Star guiding our journey. This was the great under-reported medical story of our time.

The “how” is constantly shifting. Early on it was in starting a corporation or hunting out rental car discounts in Nevada. These days it’s in creating UPC codes, managing our DVD supply chain, and understanding the economics of movie theater box office sales. At each stage, the learning curve is still just as steep. And the trauma and workload is always threatening to overtake me.

But I often remember the words of Nietzsche, “One must have a little chaos in oneself to give birth to a dancing star.” We premiered at Hollywood’s Chinese Theater, played sold out screenings across the country, and were hailed as a “Must See Documentary” by the Huffington Post.

Recently I heard a sermon from renowned pastor Andy Stanley, who said that you ought to live your life such that when you get to heaven you’ll have a line of people thanking you for what you did during your life.

The greatest blessing I can think of is I don’t have to wait until I die for that.

(The film is available for download via iTunes, Google Play, and Amazon VOD January 21st. It is available on DVD via forgottenplague.com)